Cuts putting lives of learning disabled at risk, say nurses

Inconsistent levels of care are putting patients in danger, and are being exacerbated by budget cuts, survey reveals

The loss of 61,000 general nursing posts since the cuts programme began is having a damaging knock-on effect, as specialist nurses (where they are in place) become overstretched. Photograph: Layton Thompson Layton Thompson/PR

When the abuse of adults at Winterbourne View hospital near Bristol hit the headlines earlier this year it catapulted the mistreatment of people with learning difficulties in residential settings into the headlines, and prompted calls for immediate reforms to protect vulnerable people. However, if advocates for change had hoped that the revelation would be the final alarm raised about poor care for people with learning disabilities, then a new report from the Royal College of Nursing (RCN) is likely to shatter those hopes.

At its annual congress the college will today on Wednesday publish the results of a survey of hundreds of specialist learning disability nurses. The majority of those who responded claim that cuts across the NHS are putting the lives of vulnerable patients at risk. The conclusion of most specialist nurses surveyed was that patients with learning difficulties were being put in danger because of inconsistent levels of care across the country and that this was being exacerbated by widespread budget cuts.

Three-quarters of respondents (74%) said they had witnessed cuts to services in the past year and, of those, 73% said they were concerned for the safety of patients as a result. More than half reported a decrease in the range of NHS services being offered to people with learning disabilities. Meanwhile, vital measures for making sure that vulnerable patients with learning disabilities have their care tailored to their needs – for example employing specific approaches if the person has difficulty communicating – are not being implemented consistently, the nurses reported. In addition, 71% said their caseloads were becoming larger while 75% reported having to deal with increasingly complex cases.

To make matters worse, the RCN says nurses are reporting that the effects of the loss of 61,000 general nursing posts since the cuts programme began is having a damaging knock-on effect, as specialist nurses (where they are in place) become overstretched. So too are cuts to other staff, such as healthcare assistants and administrators. The fact that learning disability services have been groaning under the strain for years because of a paucity of qualified specialist nurses is compounding the problem. The college estimates that the number of learning disability specialist nurses in the NHS has fallen by half since 1995 to around 6,000, some of which is the result of staff leaving for the independent sector but more recently because large numbers of experienced nurses are retiring early as budgets are being slashed.

Cheap care

Dr Peter Carter, chief executive of the RCN, says the survey results should make the government "sit up and take notice". "Nationally, we are not training anywhere near the right number of specialist nurses," he says. "Politicians need to understand that cheap care is poor care. Even the most hard-nosed economist will tell you that."

Relatives who have lost loved ones as a result of neglect within the NHS will be shocked by the RCN survey. When her daughter Lisa was admitted to Basildon university hospital for a routine operation in 2004, Mary Sharpe understood that it would mean staying by her side and supporting her throughout the process. The 21-year-old had a serious learning disability and could not speak for herself. What Sharpe did not anticipate was that after enduring "unnecessary, awful suffering" her daughter would be dead within two weeks due to what an ombudsman would later conclude was defective care that "fell significantly below a reasonable standard".

Six years after Lisa's death, the parliamentary and health service ombudsman finally documented a litany of poor care by NHS staff for her, including a failure to administer appropriate pain medication, an absence of proper assessment and care planning, and a lack of basic nursing care. It was a damning indictment and one that Mary Sharpe, a qualified healthcare assistant, believes reflects a fundamental problem with the way that people with learning disabilities are dealt with in many parts of the healthcare system.

"Lisa did not receive basic care," she says. "The people treating her ignored their basic duty of care. She was left in excruciating pain. Even when I pointed out that she was in pain I was ignored. People with learning disabilities are too often not treated with the respect they deserve. The thing is, it's not difficult to fix this problem," she adds. "What we need are properly trained specialist nurses who know what they are doing and who take their duty of care seriously."

Sharpe's experience is not an isolated one. The charity Mencap has been investigating the issue of neglect of patients with learning disabilities within the NHS for years. In 2007, its Death by Indifference report laid bare a catalogue of mistreatment within the NHS of people with learning disabilities.

Government pledges

The 2008 Michael inquiry,which found "appalling examples of discrimination, abuse and neglect across a range of health services" for patients with learning disabilities, called for better staff training, improved regulation and inspections as well as stronger leadership from health service managers and politicians. It was met with government pledges to introduce improvements. Yet its recommendations have never been fully implemented, as Mencap's latest report demonstrated earlier this year, putting the spotlight again on why neglect remains a serious issue.

Jim Blair, a senior learning disability nurse in the NHS and a consultant at St George's healthcare trust in south London, says the situation is all the more urgent because the number of people with a learning disability – 1.5 million – is expected to grow significantly. "There is no excuse, financial or otherwise, for the mistreatment of our most vulnerable citizens. Simple as that," he says.

The Department of Health (DH) says the issues raised by the RCN survey are covered in its recent UK-wide review of learning disability nursing, which is part of an ongoing consultation around this type of nursing. The review recommended the development of new specialist roles, and a requirement that managers ensure effective collaboration between general and specialist nurses, and that they "employ sufficient numbers" of trained learning disability nurses.

A DH spokesman says it is now considering how to implement the recommendations. He added that the goal was to have "an appropriately skilled workforce to cope with the increasing demand".

Dan Scorer, senior campaigns and policy manager at Mencap stresses that there have been some improvements in some places where learning disability nurses are in place but cautions that "overall changes in the NHS have been slow, and in some cases nonexistent." He adds: "The Westminster government needs to stand by its commitment to improve care for people. If it fails to do so, we fear that the result may be further avoidable deaths. It is deeply worrying to see that any progress that has been made may be undone by cuts to services."

For Mary Sharpe, the issue comes down to a "lack of respect" for people with learning disabilities. "My daughter was treated appallingly," she says. "It came down to basic care that wasn't given. Surely we can get that right?"